SAM...MORE THAN A CONQUEROR: Twerking and ending the word

Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror

SAMUEL - COMPLETE IN GOD
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Tuesday, March 4, 2014

Twerking and ending the word

I wouldn't consider myself a term-o-phobe...unless it's a word meant in a derogatory way of course (I have no actual clue whether that's even a word so don't quote me. Would jump up and grab a dictionary quickly but with a 3ton contraption dangling from my ankle, there's not a lot of quick happening round here). It did not phase me at all to have Sam proudly featured on a Rare Disease Day banner recently...occasionally I have a little faith in my fellow human beings and their ability to consider 'disease' in this case in the correct context. And let's be honest, Sam is not the healthiest lil dude smurfing around and with things like autoimmune issues and the rest of it, illness quite often rears it's head along our journey with Rubinstein-Taybi Syndrome. Most things in life have an ambiguous connotation, sometimes you just gotta focus on what's real for you and not sweat the small stuff. So,while I did twerk my post to read Rare Disease / Syndrome / Condition Day (Twerk? Really? Bleh...now I have images of Miley Cyrus assaulting my brain. TWEAK folks! I meant to say TWEAK!) I really enjoyed the spirit of unity and support displayed all over the social media and felt even more blessed when finding out that all seven of Sam's 'school friends' and their moms had donned jeans for genes. Too precious ♥

(Pics below as I am still figuring out this whole Android blogging app)

Yesterday was the official 'Spread the Word to end the Word' Day. People using the r-word as a means of insult in a derogatory way... that I do have a problem with. If it's a doctor referring to Sam's growth or development...sure, 'retarded' is an acceptable term. I can't say I agree with ANYONE referring to Sam's cognitive or academic abilities as retarded...yesterday, after several requests on my part, the kid correctly identified a parallelogram out of four possible shapes... and not the boring basic shapes he's known for years, but more challenging shapes like ovals and pentagrams. That's no mickey mouse achievement for a 4yr old. People referring to people/movies/situations/objects as retarded is nothing short of a neanderthal mentality. Really. Move on o' ye uninformed cavemen. People with intellectual/cognitive challenges are taking the world by storm...they have to work ten times harder to achieve what comes naturally to you, have to constantly prove that they are worthy of respect and acceptance...it makes them more diligent, more passionate and relentlessly determined. The only person whose intelligence requires questioning is the one whose vocabulary is so lacking that they are unable to produce a more appropriate word than the r-word. As I said, occasionally...very occasionally...I have faith in my fellow human beings.

So other than raising awareness and slamming ignorance, there's not much excitement going on in Smurfville. There could be what with night marathons, crown birthdays, school camps, Iris House Easter egg hunts and hockey tours all happening within the next 3 weeks, I should be swept off my feet with anticipation. Well I'm swept off my feet alright, just for the wrong reason. Uugghh! So frustrated with this whole ankle story. But I can tell you one thing, it has given me a fresh perspective on the challenges people, and especially parents, with physical disabilities face. We most certainly take our bodies for granted.

In closing, I recently followed a thread where several moms debated whether SensoryProcessing Disorder and even a degree of Autism are both a part of RTS. While I absolutely agree that most RTS kiddies along with very many other conditions/syndromes afflicting children, are prone to sensory issues I can assure you that it is a whole different scenario to a child who has a completely separate and additional SPD or Autism diagnosis. To simplify, if you took the RTS out of some of our children would they still have those sensory issues? More than likely not. If you took the RTS out of Sam would it remove from his life his inability to determine whether he is 1cm or 1metre from the floor, the confusing co-ordination which prevents him from being able to touch his nose when prompted, the debilitating fear with which he lives through each and every day of his life which prevents him from taking his first step, delighting in a slide at the park, enjoying his bath without cowering at the glimpse of a solitary water bubble floating behind him. Take the RTS out of Sam and we'd be doing a crazy loon dance at not having to deal with all these medical problems, but would the kid be in a different place developmentally? Absolutely not!

Just wanted to put that out there. Reactions on some of the support groups have been a little fragile lately, feel safer here ;)